RARE DISEASE AWARENESS DAY
Prior to my 46 th Birthday, I was very much of a go getter with 2 children and a fulltime career.
Developing Muscular Dystrophy (MD) was not even a thought in my mind. My days consisted of
managing my time around my children’s school/sports/personal schedules, being successful in my
career field and I used my lunch breaks, with my friend, to walk 2 miles for the benefit of our mental and
physical health. As time progressed, I noticed I was not able to keep up with her on our walks nor was I
able to keep up with my children’s schedules. It was like my mind wants to go but the body does not. I
recently heard someone describe it as “my muscles cannot deliver on the request it has been given”.
By the time I decided to see a Doctor, I was only able to walk half a mile at a time. As you may have
guessed my doctor’s first response was well you are getting older and you need to build up stamina to
keep such a busy schedule. I knew this was not the case for me because I was keeping up until I physical
could not any longer. That visit was the beginning of my journey to find a diagnosis. I am an analyst by
nature and wanted to know why I was getting weaker.
After several doctor and health plan changes, I was able to find a Neurologist that listened and had
knowledge of MD. He was able to refer me to the UC Davis Muscular Dystrophy clinic in Sacramento,
California. Following my 2015 visit I was able to get a DNA test completed in 2016 and was diagnosed
with LGMD 2L (which is now referred to as LGMD R12). I was so grateful I finally had the diagnosis. My
next question was what do I do next?
The real answer was that I did not need to know what to do next, I just needed to reach out to all
resource options available for guidance. I have a progressive disease and the solutions for help would
change over time. Since 2016, I have been under the care of a doctor that specializes in MD near my
home in Idaho, have been able to gather knowledge from MD symposiums and their website, attended
support groups, been guided by others with MD like the writer of this blog, Tomeka, as well as MDA
Team Members. I changed my career path from the corporate world to focusing on my Intuitive Life
Coaching business to allow for the flexible in life that was now needed. Recently I had the benefit of
working with a Physical Therapist (PT) that specializes in neuromuscular diseases. I know other
resources will be needed as time goes on. For now, I continue to gather knowledge each day.
My goal is to continue to look for ways I can do the activities I enjoy like traveling, reading, crafting,
camping, and meeting with my life coaching clients. I know there will be tough days so I will also
continue to teach myself how to “Live” with MD not let it define me. My focus is to make each day
Blog contributed by:
Intuitive Life Coach